Living With Celiac Disease

Knoxville (WVLT) - Many of us have heard the expression "you are what you eat," but for millions of Americans, no matter how good their diet is, their food choices could be making them extremely sick.

We're talking about a highly misdiagnosed disease that millions of people have, but probably don't know!

In a special two part series, Volunteer TV's Stacy McCloud tells us about a hidden medical epidemic called Celiac Disease.

Playing in her front yard with her three puppies isn't something Lauren Alton has always had the energy to do.

"It was everyday. Some days I felt okay, but most days my tummy hurt," Lauren said.

A couple of years ago she stayed extremely ill.

"Stopped eating, losing weight, I just can't remember all the things we were told," Lauren's mother, Sharon Alton said.

Countless doctors appointments later, specialists diagnosed Lauren with an auto immune disorder most have never heard of. Celiac Disease, a lifelong illness with no cure.

"It was an intimidating kind of frightening answer at first, but it was an answer, and when you are in that situation, alot goes on in your mind, and you are scared, and to find that this is a disease that is treatable by avoiding certain foods was a relief," Lauren's father Dan Alton said.

That was the good news. The problem, they had never heard of what they had to eliminate. It's called gluten and was in about every food she ate.

Damage to the small bowel is what makes Celiacs feel sick. If they ingest the protein, it triggers an immune response that damages the villi, hair-like fibers that line the intestines. That's why in addition to blood work and genetic testing, doctors use a biopsy of the small bowel as a gold standard in diagnosing.

"People are coming in now and asking, could I have Celiac? I never heard that five years ago, then last year I heard it every week," said Dr. David Lee from Gastrointestinal Associates.

Despite an increased awareness, Celiac is still considered a hidden epidemic, affecting no race, age, gender, or region any more than another. It does tend to present in childhood more often than adults, but can lie dormant for years before being triggered.

"There is so much we don't know about. We talk about the tip of the iceberg as far as diagnosis, but it think it's the tip of the iceberg as far as knowledge of the disease," Dr. Lee said.

The symptoms can be silent, but can include any, or just some of following: Generalized stomach pain, changes in bowel habits, bloating, headaches, fatigue, weight loss, malnutrition, anemia, skin rash, mouth sores, depression, and in children a failure to thrive.

You can see how it's easy for Celiacs to have been previously diagnosed with things like Irritable Bowel Syndrome, Gastroenteritis, Nervous Stomach, Gallbladder Disease, or Heartburn. If left untreated, Celiacs have a higher chance of more serious medical problems like certain types of stomach cancers.

The good news, all these problems seem to be reversible. Anywhere from weeks for symptoms to go away, to five years for the cancer risk to decline.

"Your body is a wonderful thing and can heal itself if it's well treated," nutritionist Mary Sue Walker said.

About 3 million Americans live with Celiac that breaks down to about 60 thousand Tennesseeans.

The problem, the majority of Celiacs don't know they have the disease. Some reports say as many as 95 percent of cases are undiagnosed. Doctor Lee believes with recent awareness that number is around 75 percent. Still that means there are 2.5 million Americans unaware, enough to fill Neyland Stadium over 22 times.

"It's not rare. One in one hundred, that is as common as hereditary high cholesterol," Dr. Lee said.

Since the average Celiac goes about 11 years undiagnosed, the Altons feel lucky it took just one year to figure out what was causing their daughters problems. Also, it only took a few months to get the hang of a gluten free lifestyle. Realizing all it takes to feel good again is altered recipes and a big dose of patience.

"It's not a disease there is no hope for," Dr. Lee said.

Celiac is genetic -- researches have no idea why one person is more disposed than another, but do know if someone in your immediate family has it, you have about a ten percent higher risk of having it as well.

With doctors here diagnosing several cases each week, there is a big market out there for gluten free products.

In Part Two, we'll dig a little deeper into the diet of a Celiac and what local grocers, restaurants and even a support group is doing to make the diagnosis a little easier.

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